Carter has been doing well. He had the abdominal ultrasound in October and everything was normal (for him) still not sure what the reason for his pain is, but it has seemed to decrease over the past few months. We had his 6 month appointment recently with his local neurologist at UCI and recieved a prescription for a motorized scooter. It's something we've been talking about for awhile now, but very bittersweet.. He will only be using it at school for now and we will still use his manual wheelchair for long distances when we go places. We don't want him to use it too often, but it will allow him to be more independent and keep up with his friends out on the playground. He is VERY excited about it. He wants "hot red". =) Aside from the scooter his appointment was mostly uneventful, just a follow-up to see how he's doing. His strength is still good but the issue is his increasing fatigue now, we have to limit him some to keep from speeding up the progression of his Duchenne but also want him up and active as much as possible.. it's a balancing act.
We will be busy the next 2 months, he has appointments coming up with Allergy/Pulmonary, Endocrinology, Cardiology, and his 2nd visit to UCLA for the DMD study at the end of next month. I wiill update on how all these appointments go. They're mostly standard follow ups, but we have a few things to discuss with his endocrinologist and will be talking to his allergist about testing his blood levels again to see if the milk allergy has changed at all. It's been 3 years since we last checked and I'm really hoping to see a drop. Not sure if he will ever outgrow it completely, but it would be great if we could get to a point where he's not as dangerously allergic as he is now.
I'll leave you with some pictures =)
Looks beautiful!!! Just wanted to come by and check for updates on Carter because everytime I see the nfl psa about Duchenne I think about you guys!
ReplyDelete